I am currently reading the book A Guide to Mental Health Issues in Girls and Young Women on the Autism Spectrum by Judy Eaton. I’m only halfway through the second chapter and it’s so incredibly validating. The book talks about misdiagnosis and co-occurring diagnosis of many psychiatric conditions in autistic girls and young women. I can relate to so much of it.

One concept that I found resonated particularly with me was “secondary misdiagnosis”. This refers to a situation where, while a woman was diagnosed as autistic initially, somewhere along the way, her diagnostic records “disappear” and she is rediagnosed as something else. Yes, that’s me! The book has a UK-based focus and I have been told quite often that, in the NHS, your records automatically move where you go. This is not the case here in the Netherlands: you have to transfer them yourself. Apparently though, in the UK, records can disappear too.

In the second chapter, the author discusses misdiagnosis of autistic girls as having an attachment disorder, disruptive behavior disorder or (emerging) personality disorder. Today, I will talk about attachment disorders.

In August of 2016, I demanded an independent second opinion on my autism diagnosis, which my psychologst had removed, for the first time. My psychologist told me she’d set things in motion, but would have to consult with the brain injury unit’s psychiatrist first. After all, my having sustained a brain injury shortly after birth was her primary reason for removing my autism diagnosis. As she returned, the weirdest diagnostic process I’ve ever seen, emerged: she started negotiating diagnoses with me. She said she was willing to diagnose brain injury-related personality change instead of the personality disorder she’d initially diagnosed me with, generalized anxiety disorder and an attachment disorder. I took time to think and eventualy ignored the attahment disorder thing, while reluctantly agreeing to the rest. We still used DSM-IV, after all, where you have to have endured “pathogenic care” to be diagnosed with attachment disorder.

In DSM-5 and the newest edition of the ICD, which was published in 2016, your early childhood still has to have been less than ideal, but the criteria leave room for milder forms of less than optimal care, such as your parents not having been very nurturing. I guess in my case, even with perfect parents (which I don’t have), my premature birth and three months in the hospital would suffice for the current “inadequate or inconsistent care” criterion for reactive attachment disorder.

However, the criteria for RAD say that the child cannot be diagnosed with it if they have an autism spectrum disorder. I understand this doesn’t mean autistic children and adults do not have attachment issues, since I for one do. However, when someone is diagnosable with autism, they cannot be diagnosed with RAD too. In other words, my psychologist ought to have ruled out autism – which she did a pretty poor job of doing – before trying to label me with RAD.

There are several features of attachment disorder that overlap with autism and particularly with pathological demand avoidance. For example, children with attacchment disorder as well as those with PDA can be superficially charming (in order to get what they want), indiscriminately affectionate with unfamiliar adults and inaffectionate with primary caregivers. Both are often defiant or manipulative. They also both can be controlling or bossy. Children with RAD are however more likely to be cruel to animals or other people or destructive towards property. They often show a preoccupation with such things as fire, blood, death or gore. Autistic children as well as those with RAD may avoid eye contact, but RAD children do make eye contact particularly when lying.

Judy Eaton outlines several distinguishing features between autism and attachment disorder. In the ICD-10, the following are mentioned:

Children who have a reactive attachment disorder will have the underlying ability to react and respond socially.

When abnormal social reciprocity is noted in children with reactive attachment disorder, it will tend to improve significantly when the child is placed in a more nurturing environment.

Children with reactive attachment disorder do not display the types of unusual communication seen in children with autism.

Children with reactive attachment disorder do not have the unusual cognitive profile often observed in children with autism.

Children with reactive attachment disorder do not display the types of restricted interests or repetitive behaviours seen in children with autism.

I definitely see how I have attachment issues. I am usually more open to strangers than to my own parents. Particularly as a teen, I’d also direct most of my aggression towards my mother. I could also be quite defiant. I however also definitely have communication oddities, repetitive behaviors and restricted interests and an unusual cognitive profile. I never “recovered”, though that could be blamed on the fact that I lived with my apparently inadequate parents till I was nineteen. Or it could be that I’m autistic.

Today, May 15, is pathological demand avoidance syndrome (PDA) awarness day. Pathological demand avoidance is a subtype of autism characterized by extreme anxiety, a need to resist everyday demands and a need to be in control. Core features include:

Passive early history in the first year, avoiding ordinary demands and missing milestones.

Continuing to avoid demands, panic attacks if demands are escalated.

Surface sociability, but apparent lack of sense of social identity.

Lability of mood and impulsivity.

Comfortable in role play and pretending

Language delay, seemingly the result of passivity.

Obsessive behavior.

Neurological signs similar to those seen in autism.

When I first wrote about PDA, I wasn’t so sure I believed in its existence. I recognized and still recognize many features, but the condition isn’t recognized in the Netherlands, so I can never be sure whether I have it. Also, I doubted whether my behavior may be a normal reaction to being in an institutional environment for too long. However, when I read stories from adults with PDA or parents of children with PDA, I recognize a lot. I am going to write about this now.

Pathological demand avoidnance is an autism spectrum disorder that shares traits with oppositional defiant disorder and reactive attachment disorder. However, children with PDA are not willfully naughty. The only rule I routinely broke was the one about not stealing candy. Then again, doesn’t every child do that?

I was a quiet child. However, i could show aggression seemingly out of nowhere. I acted out particularly when my parents or sister wouldn’t do as I said. For example, even as a teen I had no clue when it was not appropriate to demand my parents do something for me and I’d get upset if they refused.

I was an early talker and quite sociable as a young child. For example, I’d shout “Hi!” at everyone we met in the streets. This is expected in the tiny village my husband and I live in now, but it is definitely abnormal in Rotterdam, where I lived as a child. I was comfortable – perhaps too comfortable – in social interactions with strangers. As I grew older, this got worse. This is what got me thinking I might have attachment issues.

I was very comfortalbe in pretend play, but on my own terms. Autistic children don’t tend to engage in pretend play with other children, but I did. I however dominated the play situation. I was always the one who thought out the scernarios we were going to play. I also made the rules of what was “proper” pretend play. For instance, my sister could not say “My doll said ___”, because after all she was acting out her doll.

Most of my life, I’ve been able to hold down a conversation, again as long as it’d go on my own terms. I tend to dominate conversations and make them about topics I want to discuss. When this happened at my diagnostic assessment, my parents said I wanted to make conversation about me all the time. This isn’t necessarily the case. For instance, yesterday a Christian nurse and a patient with his own set of religious beliefs were discussing religion. It wasn’t about me at all and I didn’t make it about me, but as soon as i jumped in, I tried to control the conversation.

The core feature that got me thinking about PDA as applying to me, is however my resistance to ordinary demands. This may be an oppositional behavior too, but in PDA, the need to resist demands is not out of defiance. It seems to be more a core need stemming sometiems from anxiety and sometimes from sensory issues. For example, children and adults with PDA might refuse to brush their teeth when asked, but this is commonly out of sensory defensiveness. They may refuse to do household chores out of anxiety. Interestingly, they may do certain tasks that create anxiety in them when they’re asked to do them by others, when they are on their own. I can do household chores much more easily when I am the one in control or when I’m on my own than when it’s someone else demanding I do them.

Children and adults with PDA are often described as Jekyll and Hyde. They can act perfectly normal as long as they’re in control and their anxiety isn’t provoked. However, when people make demands of them or situations or people don’t follow their rules, they have rapid mood swings. I definitely relate to this and often wonder whether it’s my autism or a borderline personality disorder trait.

When I had a psychological evaluation in 2010, it included a questionnaire about attachment styles. Attachment is the bond an infant first forms with their parents or primary caregivers. When a child was traumatized early in life, insecure attachment or attachment disorders may occur. In the diagnostic criteria for reactive attachment disorder (RAD), this trauma is to be either abuse or being away from the primary caregiver for a prolonged time. Children adopted from orphanages are the most well-known population to be at risk for RAD, but insecure attachment can occur in milder cases of early childhood trauma too.

Attachment disorders in children are characterized by markedly inappropriate relatedness to others in most contexts (so not just with parents). There are two types of attachment disorders. One, which is called reactive attachment disorder in DSM-5, is characterized by abnormally inhibited or hypervigilant interactions with others. The child has developed an ambivalent/anxious attachment style. A child who has developed this attachment style will react with suspicion and mistrust to their parents, while at the same time being overly clingy. Adults who exhibit this pattern of attachment will alternate between rejection of and dependency on others.

My evaluation report said I tended towards the anxious attachment style as well as the preoccuped attachment style. Children who grew up with ambivalent attachments often later develop into adults displaying the preoccupied attachment style. This means they constantly seek approval of others, are overly self-critical, and constantly worry that important people in their lives are going to reject them. As a result, they act overly dependent.

The other type of attachment disorder is called disinhibited social engagement disorder or disinhibited attachment disorder. In this type of attachment disorder, the child is overly sociable, friendly with strangers, nonselective in their interactions and may display attention-seeking behaviors. They also often have co-existing behavioral or emotional disturbances. Kids with disinhibited attachment disorder often do not see the consequences of their behavior. For example, when a child lies, they often do not realize that it will cost them their believeability.

Children with attachment disorders need just the right balance in parenting between affective availability and consistency in response to misbehavior. It is recommended that parents do not show strong emotions when they respond to the attachment-disordered child’s misbehavior. It is also important that the child learns to accept the consequences of their behavior, so parents should not come to the child’s rescue when they get into trouble.

Adults with reactive or disinhibited attachment disorder or attachment issues are often diagnosed with narcissistic, antisocial or borderline personality disorder. Some people say that it is important to disninguish between personality disorders and adult attachment disorders, because adults with attachment disorders need to have their trauma recognized. I believe that, if there is evidence of trauma, of course a person needs to have this recognized and get appropriate treatment. Then again, this does not mean that a person should not face the consequences of their actions. I honestly believe that the key determiner of the right intervention for anyone displaying disturbed behavior should be what works, not what is thought to be the underlying cause of their behavior. After all, we cannot pick at people’s brains and tell whetehr it was childhood trauma, genetics, or “free will” determining the behavior.